It all started when I went to the dentist for a normal routine and x-rays. The dentist noticed something in my x-ray, a mass in my lower jawbone. My family and I, of course, were very concerned and decided to go see an oral surgeon. I was diagnosed with a Central Giant Cell Granuloma. The oral surgeon has seen these tumors many times and proceeded as usual by curetting the area (surgically removing the tumor). We thought everything was fine after surgery and we could forget about it, we were wrong. I went for a follow up appointment and the doctor found another lesion growing in a different spot. Again, it was surgically removed.
About a year went by and again, another lesion was growing in my jawbone. At this point, my local doctor decided he could no longer help me and I was referred to a larger hospital. It was the same story there, I would get a tumor and they would remove it. During this time, I lost feeling in my lower jaw/face/lip and most of my teeth as they took them with the tumors. We tried many other "non-surgical" methods such as Calcitonin and steroid injects but ultimately nothing worked. As we were trying these methods, the tumors in my jaw continued to grow.
In 2004, I was again referred to another hospital (Mayo Clinic). At this point, my only option was a complete jaw resectioning. This is when they take my entire jawbone and replace it with bone from another part of my body. I had this 21-hour surgery in 2008. I was in the ICU for 3 days and the hospital for 5 days; it was one of the worst experiences of my life.
We really thought it was over now but it wasn't. About a year after surgery, I had three more tumors growing. Even the best doctors were at a loss and didn't know what to do. My oral surgeon found a very rare study that was conducted using the medication interferon. If anyone knows interferon, it is a VERY harsh drug. I have been on it for two and a half years and am sick about every other day. Debilitating headaches, nausea, infections, fevers, you name it, I have it. It feels like it's slowly killing me. To top things off, it is only kind of working. Of the three current tumors, one is shrinking, one is the same, and one is growing. The one that is growing is in a very dangerous place where surgery is not even an option.
Presently, tissue from my tumor was sent to a lab and a genome test was conducted. The test came back with wonderful news and it was my first glimmer of hope in 18 years. It pinpointed a mutation in my cells that is the same mutation found in melanoma. The mutation is caused by an enzyme that is inhibited by a medication called Trametinib. My doctor said if I take this, my tumors might be gone in a week....... A week? That is UNBELIEVABLE!
The bad news is that I am unable to get the medication through insurance or the drug company because it is considered "off-label" or "experimental". In addition, my doctor said that there would never be enough evidence for a clinical trial because I am so rare. This medicine is very expensive and I am now resorting to my last option, my friends and family. Please help me in any way you can. I will be eternally grateful to you all. Prayers are also accepted :)
- Kate Sullivan
- Chris & Al Livingston
- Patrick Getz
- Chad & Arminda Von Holten
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